Disorders of sex development (DSD): Clinical service delivery in the United States

Abstract

Following the principles of care recommended in the 2006 Consensus Statement on Disorders of Sex Development (DSD), along with input from representatives of peer support and advocacy groups, this study surveyed DSD clinical management practices at healthcare facilities in the United States. DSD are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. Facilities providing care for patients with DSD were targeted for participation. Specialty providers completed a survey with questions in six broad categories: Institution Information, Nomenclature and Care Guidelines, Interdisciplinary Services, Staff and Community Education, DSD Management, and Research. Twenty-two of 36 targeted sites (61%) participated. Differences were observed between sites with regard to what conditions were considered to be DSD. All sites reported some degree of involvement of pediatric urology and/or surgery and pediatric endocrinology in the care of DSD patients. Gynecology and neonatology were most frequently not represented. Wide variation was observed across sites in continuing education standards, obtaining informed consent for clinical procedures, and in specific clinical management practices. This survey is the first to assess DSD clinical management practices in the United States. The findings establish a baseline of current practices against which providers delivering care to these patients and their families can benchmark their efforts. Such surveys also provide a practical framework for collaboration in identifying opportunities for change that enhance health and quality of life outcomes for patients and families affected by DSD.

Psychosocial Screening in Disorders/Differences of Sex Development: Psychometric Evaluation of the Psychosocial Assessment Tool

“…Unfortunately, more than a decade after the 2006 Consensus statement which highlighted the importance of multidisciplinary care [1], many DSD teams still do not offer universal comprehensive services, and often lack, in particular, behavioral health providers [18, 19]. Barriers to inclusion of behavioral health in DSD comprehensive care have not been delineated but likely include lack of access to behavioral health providers (with DSD expertise, especially), inadequate funding models for multidisciplinary care [20], and/or the financial and stigma-related barriers found in rural or remote resource-poor communities [21, 22].…”

Navigating Surgical Decision Making in Disorders of Sex Development (DSD)

“…A second difficulty derives from the limited availability of providers with specialized training to implement these interventions. Healthcare systems and centers have not fully implemented Consensus Statement recommendations to include behavioral health providers as full members of multidisciplinary teams ( 65 ). Healthcare systems are frequently found not to offer adequate funding for complex multidisciplinary care ( 66 ).…”

Under-reported aspects of diagnosis and treatment addressed in the Dutch-Flemish guideline for comprehensive diagnostics in disorders/differences of sex development

“…In recent years, many studies have been published on new diagnostic possibilities and management approaches in cohorts of patients suspected to have a disorder/difference of sex development (DSD) 1–13. Based on these studies, it has become clear that services and institutions still differ in the composition of the multidisciplinary teams that provide care for patients who have a DSD 11 14. Several projects have now worked to resolve this variability in care.…”